Grace and Kevin entered the empty waiting bus for the State Fair first. Graham and I followed. The bus driver had everyone else wait while he and Kevin made sure Grace was all fastened down for the ride. Graham chose seats for he and I. He chose the bench right by the accordion on the double bus. We were all settled when the rest of the people filed in and eventually the bus took off. There were three people across the aisle from Graham and I. I can only guess a mom, dad, and college-aged daughter. Two of three wore Iowa State shirts, the other a shirt with the American flag. They all wore Nike shoes that had seen better days. I noticed the man’s gaze settle on Grace. “I’m surprised someone would go to all the work to bring her out here,” the man said. He was looking right at Grace as he said it. I leaned forward but looked down. His wife didn’t say anything immediately but then she said “Maybe they just take her to a few things”. After a pause he spoke again saying “Maybe they get more out of things then I know.”

If the two of them said any more I missed it. I missed it because Graham was psyched to see the accordion of the bus expand and there were trains – so many trains below.

The conversation has haunted me in a way. I wonder if I should have inserted myself? But what would I have said?

First, I’d like to think I’d say thank you for noticing the work we do. It is work to do things with Grace. There’s a level of planning for her that we don’t worry about with Graham. There are things she has to have, and not just things we can pick up somewhere on the fairgrounds if we forget. There are the hills we get to push her up. There’s the trying to find a space in a crowd of people for a girl in a wheelchair to be up front and see what you want her to see. The crowd just doesn’t split when a wheelchair draws near.

Then I’d have confirmed we do take her to a few things we know she loves. The DNR building has the fish. We saw dancing at the Bill Riley talent show. We hung out with Abby Brown at the PBS booth for just a few minutes. There was music everywhere. We ran into one of our favorite people, Hannah. Plus she was just outside. It’s summer. Kids should be outside. She also endures the things the rest of like!

As for his last comment, I don’t know what I would have said. He’d touched on one of the great mysteries of Grace. The amount she takes in and what she does with that input is hard to discern. But here’s the thing, she didn’t complain. She looked at the doll houses. She watched the bands. She slept a few minutes when Graham couldn’t decide what his one thing to do on the midway would be. She watched the dancing. She watched the people.

But there’s also this…we were there as a family. We attended the state fair together. Sure we split up at times because Grace can’t do the same things that Graham does. For example, he likes to ride the skyglider. Even if we did get Grace on there someone would still have to run her wheelchair up to the other end of the lift. But we came together, left together, and hung out quite a bit together that day. Family time is important. Tradition is important.

I’m sure it would have been too much to tell him that there are also bits of grief mixed in for something seemingly just normal. There were girls who look her age walking around the fair in groups together, no parents in sight. There were girls her age in the talent show who I watched wondering about what could have been. I looked at what girls Grace’s age were wearing and wondered if they would think it was strange if I asked them where they got their clothes. I feel like Grace is in a bit of a fashion rut…out of kid sizes and the places I’ve relied on to clothe her! (I find myself unsure where to shop for her now. I want more than anything to keep her relevant. She’s already got plenty, not in her favor I don’t need to set her up for anything based on how I dress her.) Middle school looms and has me anxious for her, that’s a different blog I’m sure. There are the looks. The people who feel sorry for her. The people who feel sorry for us. The people who look away when you make eye contact. There are the little kids who crane their necks backward to keep their eyes on her even as their parents holding their hands pull them forward. There are families getting on the skyglider, families walking together hands linked, families who appear more nimble than ours. The grief just lies on the edges, I’m aware of it, but on this day I could process it and keep going.

Finally, I’d say I’m grateful the man could acknowledge that he didn’t know what he didn’t know. Some people count her out automatically with just one quick look. I sometimes have said that it takes a special person to really see Grace. I’m not so sure special is the right word-it’s not enough. What I’ve learned is that it takes someone with an open mind, an open heart, and a willingness to take the time to see that matters.

It’s a bit strange to consider how many of the conversations like the one I heard that day about Grace I’ve missed as random people have encountered us. As I finish writing I’d just encourage you to keep an open mind, and open heart, and be willing to see what you may not have experienced.

Grace turned 10 last week. We celebrated with a few presents and a cupcake for her to smoosh. There were Cheetos for her classes at school and a few lollipops for those who don’t eat Cheetos. We also sent cupcakes to the people at Target Pharmacy and to all three offices of our pediatrician. The people at the pharmacy and at the pediatrician’s do a ton for Grace – and that’s just the stuff we know about! I’m sure that there is more that we don’t know. Despite the workload she creates they consistently have come through. They’ve been doing it for 10 years.

What Kevin and I have talked about in the leading up to Grace’s birthday has been less about her being 10 and more about how we have been dealing with epilepsy for 10 years.

Grace apart from epilepsy is a pretty cool kid. Although I can’t stack her up against a normal 10 year old, she’s her own version of 10. She definitely has things that she likes and that she doesn’t. She has personality. She has the ability to make noise. Her facial expressions are priceless. She is learning things. I take pride in her stubbornness. (She will not be messed with. She’s not a pushover.) There are people who love her. She knows what’s going on around her. She is genuine. She is funny. And when she looks me in the eye and smiles I’m pretty much just a puddle. We still snuggle each day, often times with her little hand resting on my cheek.

Just this morning she was in physical therapy doing something that’s really hard for her, at one point she took my hand for just a minute. Then she rubbed her face, a sure sign that she is a bit frustrated. After the rub she took my hand again and she began to navigate the obstacle. She is a very tough kid, which you may not see if you don’t really look.

Epilepsy has affected Grace in numerous ways. She’s never really able to be alone. There’s much that’s out of her control, her own body often times won’t do what she wants it to. There’s a randomness to epilepsy, she can be interrupted at any time. Her ability to speak for herself has been impacted. It takes her longer to learn things. It takes her longer to do things. It’s isolating. She’s completely dependent on others (and for Kevin and I the challenge of finding the right “others” is a constant concern). She never really was able to do “regular” kid things and won’t do “regular” adult things. Epilepsy makes her more vulnerable to judgements, to unkindness, and disrespect.

Epilepsy for us as her parents has introduced fear like we’ve never experienced. We too are affected by the randomness of epilepsy. There’s grief. Judgements we face. A lack of freedom, we really can’t be spontaneous. Paperwork. Medication administration. There are never-ending big and small decisions to be made, often there is no right answer. We are caregivers 24/7. Fear. (I said that before but it bears repeating). Isolation.

Some days I try to picture Grace without epilepsy. I really can’t do it well or for very long. The reality of Grace being who she is (with epilepsy), and loving her right where she is at prevents me from going too far down that road.

It’s epilepsy awareness month. I wish I was organized enough to come up with a thought for each day to share – instead I’ve made this list of 20 thoughts I’d like to share. My list isn’t super-scientific, and it’s filled with my own opinion. I hope it can be a conversation starter if anyone reading this wants to know more about our experience with epilepsy.

1. Epilepsy is random. Seizures happen, and most of the time there is no way to predict it. We know that Grace has more seizures when she is waking up (it’s a big transition the brain makes when going from sleeping to waking, so more can go wrong), when she is tired, when she is sick, and when she is stressed. The thing is that when a seizure comes, we just have to wait for it to stop before we can move on. Sometimes we are late. Sometimes dinner gets cold. (Sometimes I want a sign when I walk in late to places that says “Grace had a seizure and we were delayed.”)
2. People can have seizures but not have epilepsy. You are diagnosed with epilepsy when the seizures are recurrent and non-provoked.
3. For some people with epilepsy a helmet to protect your head is a must! For us, we never know when a seizure will happen, and we know her head can go crashing towards the floor at great speeds. So, Grace wears a helmet. Seizure helmets don’t however have to be brown. Grace’s first helmet was an ugly brown color. The man who ordered it didn’t give us a choice. In my opinion if you have to wear a helmet you might as well have a little fun with it. That is why Grace’s helmet is pink.
4. Epilepsy is a central nervous system disorder.
5. Infantile spasms (which was Grace’s original epilepsy diagnosis) is a rare form of epilepsy. It is considered “catastrophic”. Because it is so rare we quickly learned that we’d have to leave Des Moines to get Grace care. It took us two weeks to figure out what it was for sure. I’ll never forget our pediatrician looking at the small screen of our digital camera at a short movie we’d taken of Grace “crunching”. We had to wait 24 hours after that for her first EEG to confirm what we suspected.
6. An EEG (electroencephalogram) is a test that detects electrical activity in your brain. It takes about an hour to get it set up. Because they have to glue sensors to Grace’s head (and she doesn’t like people touching her head) it’s not a very fun process. Then they record your brain activity for about an hour (or longer). I have prayed for Grace to have a seizure more than once when she is hooked up to EEG wires so that the doctor can see what is happening. I have lost count of how many EEG’s Grace has had.
7. Epilepsy affects more people than multiple sclerosis, cerebral palsy, muscular dystrophy and Parkinson’s combined – yet receives fewer federal dollars per patient than each of these. (cureepilepsy.org)
8. Epilepsy doesn’t just affect a person, it affects a family. Grace’s epilepsy affects much of our family life. Not all in a bad way. It requires flexibility. Working together. Awareness. Travel. Multiple trips to Target for meds. Patience. Meetings. Paperwork. Emails. Home health nurses. Therapy appointments/exercises. Space in our home for all the medical things that we need for her. We are trying not to let it hold us back from doing things we want to do. Although I admit, sometimes we hesitate, or delay, in order to build our confidence that we can do what we desire.
9. The official color of epilepsy awareness is purple.
10. Epilepsy is not a monster. I belong to some national parent forums about epilepsy. They are helpful. But one thing that constantly gets me is how parents refer to epilepsy or seizures as a monster. I can’t do that for Grace. Here’s the thing. We have tried mightily and multiple things to stop Grace’s seizures. She has tried and failed at least 12 medications. We went so far as to have part of her brain removed. The seizures still happen. I am not comfortable with thinking that try as we might there are still monsters in our little girl. In our girl there is stubbornness, charm, knowing, goo, fun, thinking, wisdom, and innocence. No monsters. Not here. I want to clarify that I’m not judging those other families – I’m just telling you that is not the picture we are going to use here.
11. Epilepsy is isolating. It’s hard for people to understand. Relate to.
12. Grace has intractable epilepsy. That means that she still has seizures even though we are treating her for them.
13. Epilepsy looks different in different people.
14. Epilepsy is not contagious.
15. Epilepsy can’t stop you from dancing. With the right support epilepsy doesn’t have to keep people from doing what they want to do and enjoying life. For us Grace’s participation in dance signifies that.
16. The bathroom is one of the most dangerous places in the home for someone with epilepsy. Think of all things that can break, you can hit your head on, drown in, and there’s a locked door so no one can get to you. Ugh. When Grace is taking a bath nothing can interrupt that. I won’t leave her for anything.
17. Epilepsy is. I can be mad about it, sad about it, nervous about it, but it’s still going to be there. I’d like to help people understand it. Thank you for taking the time to read this.
18. There is no cure for epilepsy.
19. When we are asked to explain Grace’s epilepsy to her peers we explain it like this. We tell them that epilepsy means that Grace has seizures. We tell them a seizure is like a storm in Grace’s brain. Everything can be going along just fine…blue skies, beautiful day, and then all of sudden out of nowhere a storm pops up to disrupt things. (A seizure happens just like that.) The storm can be short or long but then everything’s ok again, the beautiful day returns. (The disruption in her brain is done and her brain goes back to doing its thing.) They seem to relate to that explanation.
20. I love someone with epilepsy. There’s a saying about how having a child is like having your heart walk around in the world outside of your body. I can totally relate with the thought. Grace having epilepsy adds more vulnerability and risk to that. It scares me at times. Her being out in the world has also brought some wonderful people into our lives.